Autism Advocacy Coalition of Minnesota

Recent dialogue with senior officials at DHS raises concern that
coverage for IEIBT will be reduced in the near future.
Last Friday, Amy Dawson of the Autism Advocacy & Law Center had an opportunity to receive
an update from senior officials at the Minnesota Department of Human Services
(DHS) on the Department’s plan to reform Medical Assistance (MA). The high cost
of treatment and services for autism is clearly a major focus of the department.
Currently, many young children who have autism are receiving intensive early
intervention behavior therapy (IEIBT) through MA. This may change, however, as
the Department appears particularly concerned with the cost of IEIBT.
On Friday, May 11th, DHS officials announced that the Department is planning
to ask the federal government for permission to use a demonstration project to
reform services and supports for children who have autism — but they did not
disclose any details about the scope of the demonstration project or it’s
potential adverse impact on children who are currently receiving services
through MA. Comments made by high ranking officials at DHS make it appear that
the department is still in the planning stage and is uncertain exactly what its
request will be. The request will be made public in June, however, which is just
around the corner.


Will this help or hurt kids who have autism?
A demonstration project could be very helpful — both as a tool to reform MA and as a method of
eventually improving access to effective treatment and services. DHS could use
this opportunity to collect outcome data, focus on outcome measures, and improve
the effectiveness of treatment received by children enrolled in MA. Further, if
DHS takes a long-term view, then the demonstration project could be very
informative concerning methods to reduce the lifetime costs to society for
individuals who have autism. Historically, though, DHS has focused on short-term
savings through cuts rather than long term savings achieved by improving
long-term outcomes.


The Autism Advocacy & Law Center is concerned that the request for a
demonstration project will result in decreased access to treatment through MA.
Why? The concern is that DHS will request permission to provide intensive early
intervention for autism through a demonstration project and this will have the
effect of simultaneously reduce coverage for early intervention for those
children currently enrolled in MA. If coverage for intensive early intervention
is only available to children enrolled in the demonstration project, then only a
limited number of children who need intensive early intervention will actually
have MA coverage for it.


Will children currently receiving services through MA face reductions
in coverage? Amy Dawson asked what steps DHS would take to ensure that
children currently receiving intensive early intervention would not be
confronted with interruptions or reductions in treatment. The Department refused
to answer the question. Instead, one official said that they would get back to
us on that question in a few weeks and that the department was currently
reviewing services for autism. If the AALC is able to receive any information
from DHS about possible reductions in coverage for early intervention, then that
information will be shared at www.autismlawcenter.com/blog.


DHS is expected to make its demonstration project request public in June. At
that point, the public will have thirty days to provide input through a process
called, “request for comments.” The AALC will post the “request for comments”
online and encourage parents to provide feedback to DHS as soon as the request
is made public.

Take Action!  Once you click on this link it will open up a new screen-scroll down to the bottom of the screen to send an email to your representative.
 
Please Take Action to Support his Appeal
 
Representative Dan Burton recently published the letter below in The Hill
calling for Congressional hearings into the causes of autism (including mercury
and vaccines), the inadequacy of the Federal government’s response to the autism
epidemic, and the failure of the Vaccine Injury Compensation Program toassure a
safe vaccine supply and provide justice to those injured by vaccines. No
hearings by Congress have been held on these topics since those chaired by
Burton himself more than 10 yearsago. Burton is one of the few elected officials
in the United States to have the courage and intellectual honesty to confront
the autism epidemic and the many, many questions raised by a honest review of
the facts. But he needs your help.
 
What You Can Do:

1) Please click on Take Action link above to send an email to your
representative asking for support of Burton’s call for hearings, and to support
Burton’s newly introduced bill, “White House Conference on Autism Act of 2011”
(H.R. 3489), calling for a conference lead by the Whitehouse on the autism
epidemic.
 
2) Congressman Burton is no longer the chair of the House Committee on
Oversight and Government Reform, though he remains an active member.  He
isrequesting that Chairman Darrell Issa hold hearings on the VICP. 
However, given all the competing interests in Washington, we need to support
Congressman Burton’s leadership byshowing broad community support for these
hearings.  We need every single one of you to go to these Facebook pages,
the first is for the Committee, the second is for the Democratic Party members
of the Committee, and express your support for hearings and a White House
Conference on Autism.
 
http://www.facebook.com/Oversight

 
http://www.facebook.com/oversightdems

 
 
We specifically want the following:
The U.S. House of Representatives Oversight and Government Reform
Committeeshould initiate promised hearings as soon as possible on the failure of
federal health agencies to appropriately respond to the autism epidemic. It has
been ten years since this Committeeexamined the role of the federal authorities
in the autism epidemic.  We can think of no other instance where any
comparable epidemic has gone on for so long without Congressional oversight. 
 
3) Please share this email with friends and family and please post to
Facebook and other social networks. And if you support the work of the Autism
Action Network Please consider making a donation at www.autismactionnetwork.org/donation.org.



The original letter in the The Hill can be read here:
 
http://thehill.com/blogs/congress-blog/healthcare/223265-it-is-time-to-re-engage-on-the-autism-epidemic


It is time to re-engage on the autism epidemic

 By Rep. Dan Burton (R-IN)– The Hill, 04/24/12 09:15 AM ET

On March 30, 2012, the Centers for Disease Control and Prevention (CDC)
released their latest figures on the number of autistic kids in America.The
numbers are sobering. Thirty years ago it was estimated that autism affected
only 1 out of every 10,000 individuals. The latest CDC figures put the number at
1 in 88 American children (one in 54 boys); a 550 percent jump in cases since
2000. We are literally in the midst of a nationwide epidemic.
 
In the late 90s,
my grandson was diagnosed with autism. Like other family members who have been
touched by autism, I wanted to know more about this condition. During my tenure
as Chairman of the House Committee on Government Reform (1997-2002) and the
subcommittee on Human Rights & Wellness (2003-2004), I held no fewer than 20
hearings examining the state of federal scientific research into the cause of
and treatment for autism. I am proud of the work we did to raiseawareness of
autism and draw more attention to the need for research; and I am firmly
convinced that the work we did back then laid the groundwork for the historic
Combating Autism Act and forthe $1 Billion in Federal research into autism that
is happening today. 
 
Unfortunately, a great deal of misinformation has been
thrown around in public and private about the Committee's focus on mercury in
medicines as a possible factor in the autism epidemic. I’m not a scientist, but
the Committee heard from many credible scientists and experts who are convinced
that mercury is a contributing factor; and the theory is no less worthy of
exploration than the theories being propounded today that the pregnancy weight
of the mother or the age of the father at conception influences whether a child
becomes autistic. When you have no idea what is causing a disease, policymakers
and scientists should never be afraid to investigate any plausible theory. In
fact,researching possible environmental factors is a central component of
today's research on autism.

Regrettably, lost in the controversy over mercury are two other issues the
Committee explored.First, in the 1980s, Congress created the Vaccine Injury
Compensation Program (VCIP) to shield medical professionals and vaccine
manufacturers from liability if an individual suffered an injury from a vaccine.
The compensation fund, which currently contains over $3 Billion, was created to
protect the vaccine supply and to insure that all who were injured by a vaccine
received compensation in a no-fault, compassionate and easy to use manner.
 
Congress intended for families to be compensated quickly and fairly; and when
the evidence was close as to whether or not the medical condition in question
was vaccine related or not the court should always err in favor of the injured.
Our investigations found that over the years the system had broken; and what was
supposed to bequick and fair became slow and contentious. There has been no
Congressional oversight of VICP in the last decade, and the system has not
improved; if anything it has gotten worse. It is timefor Congress to revisit
this issue and consider substantially reforming this program. For the public to
trust vaccine policies, it is vitally important to have a National Vaccine
Injury Compensation Program that is efficient, effective, and fair to those who
may have suffered injury from vaccines.

The other issue we dealt with is how do we help the millions of individuals
and families afflicted with this disease. Autism has no cure and it is not a
life-threatening disease. That means that the autistic children of today will be
the autistic adults and autistic seniors of tomorrow. Our nation is ill prepared
to deal with the complex challenges posed by a generation of autistic
individuals. There have been far too many stories in the media of police,
firefighters, andteachers ill-prepared to cope with an autistic individual and
tragedy has resulted. We need to change that. We need prominent and influential
leaders to step forward and spark a national debateon autism.
 
That is why I introduced the “White House Conference on Autism Act of 2011”
(H.R. 3489). It will require the President of the United States to convene, no
later than December 31, 2012, a White House Conference on Autism charged with
developing policy recommendations on ways to address the autism epidemic and its
impact on Americans. I hope to see this bill signed into law before I retire
from Congress at the end of this year. Although I am retiring from Congress, I
am not retiring from the fight against autism, because I firmly believe as a
nation we have a collective responsibility to do everything we can to not only
stop the further spread of this disease but to help the millions of children,
adults and families afflicted by it.
 


 
Rep. Burton (R-IN) has chaired the House Committee on Oversight and
Government Reform from 1997-2002.